CancerCompass message board discussion started by Lori5 on 4/9/2008 http://www.cancercompass.com/message-board/message/all,22901,0.htm Wed, 09 Jul 2008 00:00:00 GMT Wed, 09 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi Everyone, I had a CT Scan in January and my Doctor said that I had fluid which they had noticed before. I have had a full hysterectomy so I didn't really understand how this could be happening. They scheduled me for a follow up yesterday and now I am scheduled for a Tap....I guess to get the fluid out on Friday. I requested a C125 because a friend told me to. I am a little upset this was not suggested to me in January. I have never heard of this disease and am shocked without ovaries I could get this 5 years after my surgery. I am scared and do not know what to expect.  I have a follow up appointment with a oncologist on Tuesday. My stomach gets bigger each day, I don't have an appetite and am tired more and more. I keep reading all these sad emails. Does anyone have a happy ending? I am 53!Appreciate any feedback or positives you may have. Thanks!!Lori  Lori5 Wed, 09 Apr 2008 00:00:00 GMT Hi Lori,Since you have found this site, you are off to a goodstart. This site is a good source for information. I'm assuming yourcancer diagnosis is primary peritoneal cancer. Your friend hasgiven you good advice for the CA-125. You don't mention your supportsystems, i.e. spouse, family. Do you know any nurses or medicalpeople?  What exactly did the "doctor" say to you? Do you have morethan 1 doctor? Why did you have a total hysterectomy (I'm assuming youhad a total hysterectomy) in the first place? You reference that yourabdomen has been suspicious for fluid since before January. I'massuming your story begins with your primary care doctor who then sentyou to an oncologist. I am an ICU RN.  My spouse has been suffering with ovarian cancer since 1995. The last 3 years have been intense. Knowledge is power. Writeback and maybe you can find some needed assistance here.Yes, there arehappy endings but they don't just show up. It takes friends, family,professionals and people from this site that can help you with yourpositive ending. RegardsJS Sedonalady Fri, 11 Apr 2008 00:00:00 GMT Unfortunately with cancer there is a lot of sad stories,but there is the also the real awesome ones too!!!! Im lucky,Im one of the awesome stories.In August04 I was given 3-6 months and now almost 4 years later here Iam!!!!! Im doing well, I wont lie and say things are just like before that August day, I have sideffects from the treatment but overall I lead a great life.I get to see my youngest daughter who is now 16 grow up and my grandbaby be born in October, if things keep going the way they are now.It is very important to be positve and keep your head up! I know how hard it really  is,believe me.When your having a bad day it is real important to surround yourself with people who know how to say the right things.I have lots of people who care about me,but some would always manage to something to make me sad.They didnt mean to.Know that its ok to have your down days,they too have there place.Just try not to dwell on the bad things,TAKE ONE DAY AT A TIME.I found when it was getting to hard,my husband an I would say,"ok,today we can do what we have to do to get through the day".Dont think about the next day until its here.Keep your head up!! THERE IS HAPPY STORIES OUT HERE AND IM ONE OF THEM!!!! I found this site just recently wish I had known of it back when I was going through all the "crap".Please use this site if only to vent,I find even now it helps to read others stories and talk of things only us who have gone through it can understand.There is a lot of good thoughts and advice here use it! GOOD LUCK AND GOD BLESS Heidirose Fri, 11 Apr 2008 00:00:00 GMT  On 4/11/2008 Sedonalady wrote:Hi Lori,Since you have found this site, you are off to a goodstart. This site is a good source for information. I'm assuming yourcancer diagnosis is primary peritoneal cancer. Your friend hasgiven you good advice for the CA-125. You don't mention your supportsystems, i.e. spouse, family. Do you know any nurses or medicalpeople?  What exactly did the "doctor" say to you? Do you have morethan 1 doctor? Why did you have a total hysterectomy (I'm assuming youhad a total hysterectomy) in the first place? You reference that yourabdomen has been suspicious for fluid since before January. I'massuming your story begins with your primary care doctor who then sentyou to an oncologist. I am an ICU RN.  My spouse has been suffering with ovarian cancer since 1995. The last 3 years have been intense. Knowledge is power. Writeback and maybe you can find some needed assistance here.Yes, there arehappy endings but they don't just show up. It takes friends, family,professionals and people from this site that can help you with yourpositive ending. RegardsJS  Thank you so much for responding. I cannot tell you enough how much I appreciate it.I got married for the first time seven and a half years ago, no children. I had the hysterectomy because I had been having issues with fibroids. They took everything and then I had a scan and they say fluid in 2002 or 3 the follow to that was negative and for some reason we never enter that again until this last January when I told my OBGYN at my annual that I was still not feeling like myself. She then ordered the CT and the oncologist saw fluid but not much. His response was to wait three/four months and check again. No CA-125 was ordered at that time. This Tuesday I had the Scan and lots of fluid. Yesterday I had 3 1/2 liters of fluid to drain. They are testing it and on Tuesday I have  an appointment with the oncologist that I saw in 2003. After my CT Scan and phone call from my OB I asked for a CA-125 and did that on Wednesday. I am sure they have the results. I am upset that this was not watched closer and a little upset with the Oncologist. I spoke to my OB yesterday late afternoon and told her I wanted a second opinion. My primary doctor has not been involved with this but I have copied him in. We just bought a new house and my next door neighbor is a retired oncology nurse. I have asked her to join my husband and I for our appointment on Tuesday and she has agreed. For that I feel blessed.  I am so sorry that your spouse is going through this. I don't know what to expect but it doesn't sound pleasant. She is lucky to have you in her corner. My husband is paralyzed at this point. I agree with you about Knowledge is Power. I think right now I am at the shocked stage! Any advise you can give me is welcomed.     Thank you so much!Lori    Lori5 Sat, 12 Apr 2008 00:00:00 GMT  On 4/11/2008 Heidirose wrote:Unfortunately with cancer there is a lot of sad stories,but there is the also the real awesome ones too!!!! Im lucky,Im one of the awesome stories.In August04 I was given 3-6 months and now almost 4 years later here Iam!!!!! Im doing well, I wont lie and say things are just like before that August day, I have sideffects from the treatment but overall I lead a great life.I get to see my youngest daughter who is now 16 grow up and my grandbaby be born in October, if things keep going the way they are now.It is very important to be positve and keep your head up! I know how hard it really  is,believe me.When your having a bad day it is real important to surround yourself with people who know how to say the right things.I have lots of people who care about me,but some would always manage to something to make me sad.They didnt mean to.Know that its ok to have your down days,they too have there place.Just try not to dwell on the bad things,TAKE ONE DAY AT A TIME.I found when it was getting to hard,my husband an I would say,"ok,today we can do what we have to do to get through the day".Dont think about the next day until its here.Keep your head up!! THERE IS HAPPY STORIES OUT HERE AND IM ONE OF THEM!!!! I found this site just recently wish I had known of it back when I was going through all the "crap".Please use this site if only to vent,I find even now it helps to read others stories and talk of things only us who have gone through it can understand.There is a lot of good thoughts and advice here use it! GOOD LUCK AND GOD BLESS Thank you for the positive email. I do not want to own this cancer and I want to be a fighter as well. I need badly to hear happy stories and you have lifted me. Thank you so much. I do not know what is a head. I had 3 1/2 liters drained yesterday and will go to the oncologist Tuesday. Did you have surgery and chemo if you don't mind me asking. I will understand if you choose not to reply..I am terrified but I guess we all are at this point. Thank you for your bright note. I hope to join you on the success list!Appreciated,Lori  Lori5 Sat, 12 Apr 2008 00:00:00 GMT Hi Lori,Lets talk about the good things.  Your husband, aslike me with my wife, is being your advocate.  As like me, he probablyholds a full time job. It's not easy but he needs to get on line andstart learning the vocabulary of the new world you have entered. UseGOOGLE to search your cancer and choose only sites from "well knownplaces". If your run across a word you don't understand, google it.Keep lots of ink in your printer and print up the pages you find. Yourneighbor can assist in that learning curve. Run your findings by her,wow, what a blessing. As to your "instincts" TRUST THEM!!! You wereright all along. When you all visit the docs, start your conversationby giving the healthcare providers unequivocal permission to speak toyour advocates and request your advocates to talk to the healthcareproviders. Prior to you visit, make a list of questions, it may be avery long list. Under NO CIRCUMSTANCES should the healthcare providernot clearly answer your questions. Under NO CIRCUMSTANCES should thehealthcare provider make you feel rushed or intimidated. This will bethe hardest part for you and your husband but this is where your husband andneighbor can be of immeasurable assistance. This is also whyyou/husband need to be educated in the vocabulary and potentialtreatment plans. Trust your "BS" meter. The healthcare providers havethe responsibility to make YOU feel comfortable. If you already have a "feeling" that this provider will not be as you expect, have aplan B. Start looking for a second opinion NOW! get it lined up.  Thingsto do. Get a definitive diagnosis, not a guess from the doctor. Westernmedicine really shines in diagnosing. Ask for the pathology report fromyour previous surgery. Ask for the pathology report from yourparacentesis (abdominal fluid tap). Pathology reports/slides are theholy grail of your treatment plan. Understand EXACTLY what cancer cellyou have. This correct info will drive your treatment plan. Insist on aPET/CT scan immediately. Watch you blood lab results.Particularly you red and white blood count. Watch you "liver enzymes"(google it), watch your protein counts (albumin, total protein). Watchyour kidney function tests "creatinine" Drink plenty of fluids and keepwell hydrated. Use this site http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank" rel="nofollow">http://www.intmed.mcw.edu/clincalc/creatinine.html tomonitor your kidney function. The "calculation" should be greater than60. Drug dosing is dependent on how well your kidneys are working.Doctors always assume they are functioning well. Make sure you KNOWthey are functioning well. PPC is very similar to ovariancancer and the treatments are similar. My research suggests that the first lineof treatment is intraperitoneal chemotherapy. (Google it). See whatoptions your providers offer.Nutrition and supplements are important and very often overlooked. This site has great info in that regard. 3years ago, when our journey began in earnest, I ran across a personFrancine Milano, online, who had PPC and received treatment andrecovered. I haven't written to her in awhile and I'm not sure that theaddress remains active but she was of enormous strength to me duringour "dark times". Try writing to her.milano@electrobytes.netAlthough you may have been delayed and misdirected by doctors, wife has been misdirected and mistreated by many "doctors". The time to act is now, don't allow them to delay your treatment, period!!!! We too wereangry. You will both feel overwhelmed and angry. Recognize it for whatit is and use that energy to meet your goal of tackling this cancer and"kicking its butt". It is doable. Although it is your journey and it is downright frightening, there is an enormous community here to help you. Useall of your resources and courage. As for us, another leg of our journey starts tomorrow, Sunday.We are traveling from our home in Sedona AZ to MD Anderson in HoustonTx for another opinion and probable treatment. My wife of 26 years hashad 7 different chemo's and 2 major surgeries. She is an incredibleperson and my best friend. Please write as our discussion is therapeutic for me as well. I included some links that I found helpful to me. Hopefully they will help you too. RegardsJim Shttp://www.mnovarian.org/faq_recurrent_disease_treatment.htm http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank" rel="nofollow">http://www.intmed.mcw.edu/clincalc/creatinine.html  http://www.hipectreatment.org/documents/hipec.php http://www.cancer.gov/cancertopics  http://www.cancer.gov/newscenter/pressreleases/Ipchemotherap Sedonalady Sat, 12 Apr 2008 00:00:00 GMT Heidirose, I went back to read your email this afternoon because I needed a lift. I had the debunk Friday but feel very winded today. I am tired and my tummy hurts. I keep going to a dark place but when I went back and read your email it helped. Thank you for your optimism. Anything you feel like sharing whenever you get a chance is welcomed. Right now I am so scared and tomorrow is my oncology appointment. I have everyone I have shared this with praying for me so I am blessed in that regard.Your success gives me hope, so again, thank you! You, your children will stay in my prayers as well.Lori  On 4/11/2008 Heidirose wrote:Unfortunately with cancer there is a lot of sad stories,but there is the also the real awesome ones too!!!! Im lucky,Im one of the awesome stories.In August04 I was given 3-6 months and now almost 4 years later here Iam!!!!! Im doing well, I wont lie and say things are just like before that August day, I have sideffects from the treatment but overall I lead a great life.I get to see my youngest daughter who is now 16 grow up and my grandbaby be born in October, if things keep going the way they are now.It is very important to be positve and keep your head up! I know how hard it really  is,believe me.When your having a bad day it is real important to surround yourself with people who know how to say the right things.I have lots of people who care about me,but some would always manage to something to make me sad.They didnt mean to.Know that its ok to have your down days,they too have there place.Just try not to dwell on the bad things,TAKE ONE DAY AT A TIME.I found when it was getting to hard,my husband an I would say,"ok,today we can do what we have to do to get through the day".Dont think about the next day until its here.Keep your head up!! THERE IS HAPPY STORIES OUT HERE AND IM ONE OF THEM!!!! I found this site just recently wish I had known of it back when I was going through all the "crap".Please use this site if only to vent,I find even now it helps to read others stories and talk of things only us who have gone through it can understand.There is a lot of good thoughts and advice here use it! GOOD LUCK AND GOD BLESS  Lori5 Mon, 14 Apr 2008 00:00:00 GMT Hi Lori. How are you? I hope you are doing well.My mom also had full hysterectomy 9 years ago but since 2005 she kept losing her weight and on October 2006 she suddenly felt sick, vomiting and diarrhea. It lasted for one month, we didn't know what to do that time the doctors had her CT-SCAN and saw little fluids on her stomach but did not give it much attention that time.  Starting January 2007, she always felt hard time peeing and did not have the appetite to eat.  Later on she suddenly felt having a hard time breathing.  Not until October 2007 when she experience diarrhea this week then constipation the next week and vice versa.  We hurriedly went to see an Oncologist and scheduled her for CT-SCAN, Blood Tests, X-Ray.  They saw water on her lungs so we have it removed and test the fluids, she also had exploratory surgery... which we all found out later on was bad news... the doctors said she has an Ovarian Ca.  She started her Chemo last November 2007 but the first medicine did not do anything so we change her chemo med, the good news is she is getting better from this 2nd medicine and we are still on-going with her chemo.  I am sorry but I hope I am not scaring you, I just want you to know my mom's experience. I know you are shocked right now, but just have faith in God and everything will be alright.  Sometimes you are really going to be depress, emotionally drained and all but don't lose hope.  Find family and friends who are always there to talk to you, this is really important.  I know how hard it is for you right now coz my I can also see it through my mom how hard she is going through right now... All I know is you have to me TOUGH, ready to fight, and the most important thing have FAITH in God.  Always talk and pray to him.  He will be always there to listen and help you. Pie  pie2008 Fri, 18 Apr 2008 00:00:00 GMT Thank you so much Pie,I had a tap last Friday and they took 8 pounds of fluid off me. I found out on Tuesday it was cancer and yesterday they started Chemo. I will do 2-3 rounds to try and dry up the fluid before they can go in and do surgery. I am very scared but my husband, friends and faith will get me through this along with the encouraging notes from people like you. This is all happening so quickly.I pray your Mom keeps doing better and that we all learn and teach from the experience's we are going through. She has you in her corner so she is already a head of the game.My best to all of you and thank you again for reaching out!Lori  Lori5 Fri, 18 Apr 2008 00:00:00 GMT how did your mother get ovarian cancer after having a hysterectomy. i am thinking of having a hysterectomy because my mom did of ovarian cancer on febuary 8th of this year. biggest loss of my life. hers was actually called primary peritoneal cancer/ovarian cancer always very confusing to me. anyway she lived for 7 years after diagnosis and had good success with avastin which is not a chemo. but it is an iv medication that cuts the blood supply from the tumor. it is experimental and insurance or most will not pay but we did it and payed out of pocket. my prayers are with you and your family as i sure know what you are going thru. carole caroled Wed, 23 Apr 2008 00:00:00 GMT It's odd, you can still get ovarian cancer without ovaries, because even when they are removed it is impossible to ensure every microscopic piece is removed.  Msmittens Sat, 03 May 2008 00:00:00 GMT Hi Lori,     I am sorry that you are having so many problems and I do hope I can give you some information that might help.  I did not have the same type of cancer that you have, however, I had inoperable cancer 36 years ago and I went to M.D. Anderson Cancer Center in Houston, TX.  This is the number 1 cancer center in the country.  It might be worth a phone call to inquire what they do for your type of problem.  I wish more people would find this clinic & hospital early in their diagnosis.  You can check them out on the Internet; they do have a website.  www.mdanderson.com.  I wish you luck and if you need to contact me my e-mail address is:  --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--      Gerry   gerose71 Sat, 03 May 2008 00:00:00 GMT  On 4/12/2008 Sedonalady wrote:Hi Lori,Lets talk about the good things.  Your husband, aslike me with my wife, is being your advocate.  As like me, he probablyholds a full time job. It's not easy but he needs to get on line andstart learning the vocabulary of the new world you have entered. UseGOOGLE to search your cancer and choose only sites from "well knownplaces". If your run across a word you don't understand, google it.Keep lots of ink in your printer and print up the pages you find. Yourneighbor can assist in that learning curve. Run your findings by her,wow, what a blessing. As to your "instincts" TRUST THEM!!! You wereright all along. When you all visit the docs, start your conversationby giving the healthcare providers unequivocal permission to speak toyour advocates and request your advocates to talk to the healthcareproviders. Prior to you visit, make a list of questions, it may be avery long list. Under NO CIRCUMSTANCES should the healthcare providernot clearly answer your questions. Under NO CIRCUMSTANCES should thehealthcare provider make you feel rushed or intimidated. This will bethe hardest part for you and your husband but this is where your husband andneighbor can be of immeasurable assistance. This is also whyyou/husband need to be educated in the vocabulary and potentialtreatment plans. Trust your "BS" meter. The healthcare providers havethe responsibility to make YOU feel comfortable. If you already have a "feeling" that this provider will not be as you expect, have aplan B. Start looking for a second opinion NOW! get it lined up. Thingsto do. Get a definitive diagnosis, not a guess from the doctor. Westernmedicine really shines in diagnosing. Ask for the pathology report fromyour previous surgery. Ask for the pathology report from yourparacentesis (abdominal fluid tap). Pathology reports/slides are theholy grail of your treatment plan. Understand EXACTLY what cancer cellyou have. This correct info will drive your treatment plan. Insist on aPET/CT scan immediately. Watch you blood lab results.Particularly you red and white blood count. Watch you "liver enzymes"(google it), watch your protein counts (albumin, total protein). Watchyour kidney function tests "creatinine" Drink plenty of fluids and keepwell hydrated. Use this sitehttp://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank" rel="nofollow">http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank" tomonitor your kidney function. The "calculation" should be greater than60. Drug dosing is dependent on how well your kidneys are working.Doctors always assume they are functioning well. Make sure you KNOWthey are functioning well. PPC is very similar to ovariancancer and the treatments are similar. My research suggests that the first lineof treatment is intraperitoneal chemotherapy. (Google it). See whatoptions your providers offer.Nutrition and supplements are important and very often overlooked. This site has great info in that regard. 3years ago, when our journey began in earnest, I ran across a personFrancine Milano, online, who had PPC and received treatment andrecovered. I haven't written to her in awhile and I'm not sure that theaddress remains active but she was of enormous strength to me duringour "dark times". Try writing to her.milano@electrobytes.netAlthough you may have been delayed and misdirected by doctors, wife has been misdirected and mistreated by many "doctors". The time to act is now, don't allow them to delay your treatment, period!!!! We too wereangry. You will both feel overwhelmed and angry. Recognize it for whatit is and use that energy to meet your goal of tackling this cancer and"kicking its butt". It is doable.Although it is your journey and it is downright frightening, there is an enormous community here to help you. Useall of your resources and courage.As for us, another leg of our journey starts tomorrow, Sunday.We are traveling from our home in Sedona AZ to MD Anderson in HoustonTx for another opinion and probable treatment. My wife of 26 years hashad 7 different chemo's and 2 major surgeries. She is an incredibleperson and my best friend. Please write as our discussion is therapeutic for me as well. I included some links that I found helpful to me. Hopefully they will help you too. RegardsJim Shttp://www.mnovarian.org/faq_recurrent_disease_treatment.htm http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank" rel="nofollow">http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank"  http://www.hipectreatment.org/documents/hipec.php http://www.cancer.gov/cancertopics  http://www.cancer.gov/newscenter/pressreleases/Ipchemotherap Hi Jim,    As I was reading your message I noticed that you are going to M.D. Anderson Cancer Clinic.  I have been a patient there for 36 years.  I just came back from TX Thursday evening.  My youngest daughter is now also a patient at MDACC.  My family has a genetic disorder called Gardner Syndrome (FAP).  We develop polyps in our colon and sometimes there are other cysts as well.  I have had two types of cancer: one in 1971 and then rectal cancer in 2005.  I have had eight abdomenal surgeries and open heart surgery last Oct.  Then I had what I consider miscellaneous surgeries.  At any rate I want to wish you and your wife good luck and much success with your trip to Houston.  I hope that they have some remarkable treatments for your wife.  You will find MDACC an incredible and very large community with very talented physicians with specialties in every area.  Once again, good luck!  Gerry    --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--    gerose71 Sat, 03 May 2008 00:00:00 GMT Hi Gerry,Yes, I agree with you. MD Anderson proved to be a very good thing for my spouse. She has improved greatly since our visit. I agree the knowledge of our MD Anderson doctor stood above the 13 other oncologists we have visited over the years. I would encourage all who need cancer services to consider this one. We have a return visit scheduled in July. Hopefully, good news will follow.  We both wish you and your family the best. I'm glad that you and your family have found good care.RegardsJim S.  Sedonalady Sun, 04 May 2008 00:00:00 GMT Jim,                                                                                               Thank you for your kind wishes.  As you know, it is encouraging and comforting to communicate with individuals who understand the stress that we experience when threatened with cancer.  I am glad that your wife is showing improvement and I hope that she continues to improve and is successful in her journey to recovery.  GOOD LUCK!                               Gerry gerose71 Sun, 04 May 2008 00:00:00 GMT Your message made my day.  I am stage 3c and was told  I have recurrence and possibly a second surgery to remove affected lymph nodes plus radiation might help.  Was diag. in Jan 07  I am considering this route rather than more chemo.  What was your orig. diagnosis, if you don't mind me asking?  What course of treatment/s did you have?  41gram Thu, 15 May 2008 00:00:00 GMT